Chronic Illness ~ The Elephant In The Room

It is a rare occasion these days that I write a post about anything personal. To be fair, it is a rare occasion that I post anything at all this year. With that being said, I felt compelled to come here today and write about my elephant in the room, which is chronic illness. In thinking back, I’m pretty sure that it has been at least a few years since I’ve shared anything about this, at least publicly. Why now?

In the past year, flare-ups of my conditions have been a fairly regular occurrence, more so than they have been for quite some time. I do know a big part of the reason this has been happening, but that’s not the point of why I’m writing today. This is all about the things that we who have chronic illnesses would like for others to know, and don’t often express. So without further adieu, here are some of the things that I wish for people to know.

  • We do not want pity, but compassion is welcome.
  • We want you know know that when we spend time with you, that we are making a conscious choice to expend precious energy to do so. This often means that we will have to spend a day or two resting, but it’s worth it to us. So, when times arise in which we can’t make it (and they will happen), it isn’t that we don’t want to. Our minds and hearts want to do the things you invite us to do more than anything.
  • We do welcome suggestions sometimes, just not when we’re in the middle of a flare. Giving most of you the benefit of the doubt, your intentions are probably good. If your desire truly is to help, wait until we are feeling better to make your observations and suggestions. To do so when we are sick can feel like an accusation
  • When we tell you we can’t do something, it means we can’t. Sometimes it’s clear that some of our friends and family hear “I don’t want to”, and that is not what we’re saying. We are not making excuses to get out of things. (See bullet point #2)
  • We understand that it can be challenging to be our friend, family member, or partner at times. We lose our patience with our lack of reliability too. Even though we may have to sit things out, please don’t stop asking us. Even though it is disappointing when we have to say no, try to remember how much fun we have when we can say yes. We sure do! Sometimes thinking of the good times is what gets us through.
  • From the outside it might feel to some that we are selfish, or even lazy. We are neither of those things. We often use up all (or much) of our energy doing the things that we manage to do. Even though we may look fine and don’t really say anything, we are often more tired or in pain than you know when we’re doing things. A misconception which might happen with this one is that by letting you know about this particular point, we’re trying to lay a guilt trip. Nope! We are doing all of the things that we do with you joyfully and cherish every moment, despite those things. We just don’t want you to assume that it means that we feel fine and will be able to do the same later or tomorrow.
  • We want you to know how much we appreciate the people in our lives. The little things that you do, often without even thinking of it, mean so much. When you drop by with something to eat or call on the phone just to say hello, that can be the highlight of the entire day. There are times when we may not have the energy to talk on the phone, but just knowing that you called means a lot. When we do not pick up the phone, and may not return your call for a day or two, it isn’t that we’re snubbing you, so please never think so. Unless of course, we never return your call.  >:)
  • Most importantly, please remember that even when things get rough for a little while, that we’re still the same person that you loved yesterday.

I’m sure that there are many things that I didn’t touch on, but for today, these are the ones which felt most important to mention. It is my hope that this reaches the screen of someone who needs to read it. While most of us would not assume that we are owed any of the things mentioned above, I think it’s fair to say that they sure are nice.

What I Want You To Know…Never Give Up

While the flu is what I am recovering from at the moment, I have a few chronic illnesses and conditions which I’ve talked about from time to time here. Being sick has, of course, exacerbated some of the symptoms of my other conditions. My fatigue and pain levels have been higher than usual while I’ve been ill. For the past two weeks, all I could do each day was remind myself that it would get better and not much more. Thank goodness, my brother in law was kind enough to go to the pharmacy and pick up meds and juice for me…and my sister…yes, she had it too…which sucks. I don’t know what I would have done without him. If you read this post brother…thank you! I’ve still got some recovering to do, but at least I’m seeing some light at the end of the tunnel.

For the first time in my life, I have zero guilt over all of the stuff sitting there waiting to be done. This is big for me. Before the fibromyalgia, chronic fatigue syndrome, arthritis, immune issues, and degenerative disc disease got to the point that they constantly interfered with my life, I was a total type A personality. Now I’ve reached a certain level of comfort with being where I am at any given moment, instead of agonizing over where I used to be or where I wish to go.

What I want to help you to understand is that we can thrive from right where we are…it just might be different than it used to be or how we envisioned it in the past. For example, I used to work at a corporate job and was constantly on the go. As the years went by, I had to take more time off from work…and then a car accident totally tipped things over the top and the corporate world had to go. While my creative, metaphysical , oddball (happily so) self was never a good match for the corporate world…it paid the bills. Looking back, I wonder how in the world I managed to survive in that environment.

Speaking of environment…when I was younger I used to be very involved in environmental activism…putting together campaigns, doing public speaking, and traveling to conferences. When things really hit the fan with my health, I felt like I was without an identity. Even worse, I felt utterly useless. The reason that I am so candid about this is that I know that there are a lot of people out there who feel similar, for various reasons. I’m here to tell you that it gets better in time, and that there is still so much that you have to offer to the world. Do not let anyone make you feel any differently, including yourself.

In the years since I had to leave my traditional workplace, I have dived into my spirituality and creativity…worked on rebuilding my life. I’m not going to tell you that it has been easy, but I will tell you that has been worth every last bit of the time and effort. What I have found is that I am more truly in line with myself now than I have ever been.Trust me, there is a big learning curve. There will be times when it feels too daunting, and these are the times which teach us more than we could imagine. So what can you do when you can’t do what you used to do? Your answers will be different, but here’s what I’m up to.

I’ve just finished writing a novel which is in the editing process now, have had several articles published in an online magazine, the bare bones of a non-fiction book I started in November is sitting there waiting for me, I am perfecting a few forms of art which I have found an affinity for, and I also do spiritual work in the form of readings, energy clearing, and mentoring.  The financial part will come, I just know it. The most important part is to keep moving forward. I’ve gotten frustrated more than once…and have almost thrown in the towel. Each time though, I come back stronger, and with more knowledge of how things work best for me. Most recently, I discovered that I needed to put better boundaries in place, and I’m so glad that I saw the real problem. I almost walked away from everything I’ve worked so hard on in the past few years with my spiritual practice. Not gonna happen.

As for the environmental activism I have found some great online sites which circulate petitions (which make a real difference). I’ve also written letters to or called elected officials about key environmental issues. Last year, I was fortunate enough to be having a good enough day that I was able to get out and walk in the March against Monsanto. That felt great!

Granted there are times in which I am too sick to get much of anything accomplished for weeks, times in which I can only do one small task before needing to take a break…and I’m telling you this because it is important to understand that it isn’t always easy. The point is that each of us has things inside of us which we can still contribute…no matter how small it might seem…and it all matters. We all have our own set of passions, abilities, and gifts…and it is up to each of us to find what those are and find ways to put them to use. It might take longer…you might have to be more creative…there will be down times…but the rewards are great.

In the future, I’ll be putting together more articles about thriving from where you are. They won’t all be quite this wordy (but some of them will…I can get chatty). I used to write more about topics like this in the past and wish to bring some of that back. Why? Because helping others to regain a sense of purpose and dignity means a lot to me. I’ve got years of experience in doing this for myself and I want to share what I’ve learned. Most importantly, I wish to share with you my sense of hope. Thanks for taking the time to read this. Have a great weekend. See you next time.